Alex Fox, CEO, Shared Lives Plus

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As we celebrate Shared Lives week with local and national events all over the UK, including a reception today at the Senedd and tomorrow at the Scottish parliament, we are thinking big, and thinking small. Small, because people living in and visiting Shared Lives households talk about the small victories which change everything. Victories like taking responsibility for care of a pet, travelling independently on the bus for the first time or making a new friend. But also thinking big, because we want Shared Lives to be a choice for everyone, and we want all public services to learn from our members’ values and approaches. Here is my blog for the Dept Health arguing that as well as new money, we need new kinds of relationships to make social care worth celebrating, investing in and voting for:

‘Social care was, for perhaps the first time, a defining issue in a general election. The debates about social care and the NHS were frequently focused on the issue of money. But how much money is spent by whom, is only one of the questions facing all of us who work in health and care.’

Public services were born in an age of deference: we took what was offered by experts and were grateful. More recently, we have expected choice.The money is vital, but at the heart of the challenges we face is a question about the kind of relationship we want between people and services.

The language of ‘customer service’ has taken hold. Some have taken charge of their support entirely through personal budgets or personal health budgets.

Greater choice and control are themes running through these changes and the merits of both are much debated.

But with greater choice and control comes a shift in responsibilities, which is talked about much less frequently.

The existing responsibility to pay for social care came as a surprise to many voters, but as well over six million unpaid family carers know, there have always been many more responsibilities hidden within our public service system.

These responsibilities will always feel challenging, but they are not necessarily a sign of service failure. Few of us would want to live in a world where we were under no obligation to care for our loved ones.

These responsibilities become unmanageable, however, when they are invisible and unsupported. Too many families are told there are no resources available for them, until the pressure of managing a long term condition without information, back up and breaks, leads to catastrophe or a medical need, at which point services costing thousands a week can swing into action.

We can leave struggling families to find this out the hard way. Or we can make this the time to offer people who need long term support a new deal, which is honest not just about what people are charged for formal care, but also about the responsibilities individuals and their relatives take on themselves.

This informal care cannot all be paid for or replaced with services, and that would not be many families’ first choice in any case. But it can be met with an offer of information, training, emergency back up and breaks to make it safe and sustainable, alongside maintaining part time employment wherever possible.

This new relationship between people and long term support services would need a final element: to bring the ‘social’ back into social care, and to introduce it into medical services for the first time. Where we need support for an extended period, we do not want it from a succession of strangers.

Nor do people want to be isolated and lonely at any point in their lives. In later life, that isolation can be a killer. The solution to these social challenges lies within our communities, and it is time that the role of community groups, along with community-rooted charities and social enterprises, was properly resourced.

Many are currently small scale, but social models of support like Shared Lives, Homeshare and Local Area Coordination challenge the traditional professional/client transaction, which is well-suited to brief, technical interventions, but which can undermine our skills, wellbeing and citizenship if applied to long term support relationships.

For most of happiness is not achieved through choice, quality or professionalism, but through our relationships. 14,000 people now receive personal care as part of a Shared Lives household they have chosen and in which they feel like a person, not a customer. That’s not an expensive add-on, it’s an integral part of achieving wellbeing within a model that costs on average £26,000 per person less than care homes and other regulated care models.

Long term support which feels like it shares responsibility fairly, and which is as social as it is caring might also feel like a public service system we’d all be willing to pay – and vote – for.

Dave has a diagnosis of dementia. David and his wife were told about Shared Lives by their social worker. David has a great sense of humour and enjoys socialising and getting out, so it seemed an ideal choice for both David and also for some respite for his wife.

As his condition deteriorated, another carer came on board to support the family and we incorporated some more day support and also regular overnight respite. He is very car sick, so planning between both carers for hand overs was all important, but after a few weeks, all was settled and going very well.

Dave loves going along to both carers and enjoys the social aspect of going out walking and meeting people in small groups. The Shared Lives Team are now well known locally and often meet up to play pub games or beach boules together. Dave really enjoys being part of his local community and chatting to everyone he meets. He is known for his love of Cullen Skink soup and Indian food! He even has his own dog at one carers home and is responsible for it when they go out walking together.

Dave’s wife is very pleased with the flexible support and has advised that she does not know what they would have done without it. With his condition and the extreme car sickness, staying in a small seaside town is beautiful but very restrictive.

The Shared lives model of care allows the luxury of regular time spent together with a carer, and in turn special support and relationships are possible.

Alex has dementia and has been using the Shared Lives service once a week since March 2016. However, at the request of his family, Alex recently started attending twice a week as they truly value the service and comment on how stimulated he is when he gets home from his time with me.

Part of the success is down to the pairing between Alex and me. I have been able to bring an otherwise quietly spoken, man of few words out of himself. His son John tells me the only time he willingly goes into the shower, is when he tells his Dad that Karys is coming round today.

I try to do different things each week as far as possible, but whatever we do, I take lots of photos. I send the photos on to Alex’s sons, which they value as a tool to jog his memory. Activities range from going to the library, mostly for books on fishing, collecting driftwood on the beach, spending time at the seals, picnics on the beach, adult colouring, visits to garden centres, museums, fishing heritage centres, card making, going out for lunch, to name a few. Alex loves snooker, which turns out to be the only sport he can still follow, so we watch tournaments on TV. However, this week I took Alex out to play pool which he did after a bit of persuasion. He loved it and I think he surprised himself on how capable he was.

Alex is still physically fit and loves to get out for a walk. For such a quiet man, he loves the social side of getting out and meeting people. One of the things he did that his family can’t quite believe, was to dance with me at the Shared Lives Christmas party. He took a bit of convincing, but enjoyed himself once he was up. Continue reading →

I’ve never read the wonderfully titled Last Quango in Halifax blog before by Rob Mitchell (@RobMitch92) but I will be from now on. The story of ‘Elsie’ is the most telling (and saddest) illustration I’ve read of what we get so wrong in our highly selective view of which risks matter and what we should do about them. Thanks Rob. https://lastquangoinhalifax.wordpress.com/2016/09/24/someone-to-safeguard/